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February, 2013

Martial Hearts

“They might not understand you. They might not be able to do the techniques. They might get hurt. They might hurt someone else. They may become violent.”

These are just some of the reasons why some parents would not let their kids with Down syndrome learn taekwon-do. In actuality, the reverse is true.

Kids with Down syndrome have the most to gain from studying taekwon-do. The reasons these parents shy away from it are the very reasons why they should have their kids study it. They struggle with coordination. They have low muscle tone. They cannot express themselves clearly. They cannot protect themselves. In my mind, these kids are exactly the reason why any martial art was invented.

Darryl joined my classes when he was about 9. He had very low muscle tone and was very uncoordinated. But that weakness came with a high level of flexibility. He can kick very high, which is a very big asset in Taekwon-do. The key with him was time and patience. We practiced him slowly on his patterns, sometimes one or two steps at a time, 10 minutes at a time. It takes time, but he did understand and he was able to learn the techniques.

The atmosphere of respect and discipline enabled him to learn to respect people around him, both in and out of the training hall. Taekwon-do teaches one to kick and punch. However, an integral part of the discipline is knowing its proper use –which is ONLY for self-defense. In truth, as one becomes more proficient in the art, it becomes less likely that he/she will use it to hurt someone. This is true for everyone, even those with Down syndrome.

As for the risk of being hurt, how is it different from riding a bike, playing on the playground, or even playing basketball or volleyball? The risks are always there, yet parents think nothing of allowing their kids to do all of these activities. In taekwon-do, kids wear protective gear when they spar. More often than not, clubs use soft mats on the floors for added protection.

Darryl is now a blue stripe belt. Although he progressed slower than the rest of the class, his determination and perseverance never lagged behind. He was there at every class doing the exact same thing everyone else did. He worked hard and yet still able to return a smile for everyone willing to give him one. Recently, he competed at his first tournament, against mainstream students. No stress. No nervousness. Just a big smile in his face. He didn’t win, but the reaction from spectators was far better than a medal anyway. A black belt from another school sought us out just to shake our hands. He said Darryl was “amazing and awesome.”

Truly, if anyone has the heart for it, and the ability to capture hearts, it is Darryl. A heart full of discipline, respect, innocence and love. A true Martial Heart.

An Unexpected Journey

2013-02-13

By: Jennifer Crowson

I was the proud mother of two wonderful boys and thought our family was complete when I found out I was pregnant again. I was particularly excited about the eighteen-week scan, as we had planned to find out our baby’s gender. The day before the scan we had a holiday open house (it was the week before Christmas). I confidently told all our friends and family how excited I was about my scan, as I was convinced it would tell us we were having a girl.

Fast forward to the next morning… I told my husband not to bother coming with me, as he was not allowed into the scan room anyway. I would call him with the good news later – having no idea how my day ahead would actually unfold. I lay on the bed for my scan and after forty-five minutes of silence, and the technician running over and over the same part of my belly, I started to feel something was a little strange. Why was this taking so long?

I asked, “Can you tell if it’s a boy or a girl?” hoping this would break the silence. “Yes, I think so,” she replied. More silence. “Is everything okay?” I asked nervously. She responded with a statement – and a question: “There is a good heartbeat (more silence)… Are you seeing your doctor after this?” I was. And with that, she completed her work and said, “We are all done here, and I think you are having a boy.”

Feeling deflated, worried and scared, I walked from the x-ray department up to my doctor’s office, my phone beeping every two seconds – friends wanting to know if I was having a girl, as I had fully expected to be told. I ignored the sounds and walked in silence, in conflict with myself over the disappointment I was feeling about having another boy, alongside my gut feelings that something was wrong with my precious little baby, which was far more important than his or her gender.

Without hesitation, my amazing doctor gently told me that the scan had shown some “soft signs” of a problem with my baby. She said it could be any number of things: Down syndrome, Cystic Fibrous, a genetic disorder or indeed nothing. She recommended I speak with a genetic counselor. Stunned, I phoned my husband and mother. My husband was not able to come quickly as he was out of town, and despite me telling my mum I was fine, she was beside me within what felt like seconds of our phone call.

The genetic counselor walked me through the possibilities and asked me questions about my husband’s and my genetic family history. Neither she nor the OB/GYN in the genetic clinic felt Cystic Fibrous was likely given there was no family history, but thought it would be best to rule it out with a simple blood test. Without hesitation, I agreed to this – admittedly with very little knowledge of what that condition would mean for my baby or our family.

From there, they showed me graphs and percentages measuring the likelihood that my baby had Down syndrome, given the soft signs visible on the scan and my age. All I heard was the likelihood was very high; I didn’t care about the numbers. I was asked if I wanted an amniocentesis. The idea of this terrified me, as I knew it carried risks. I had not had the triple screen test, as for my husband and I, it was not the right choice, nor had an amniocentesis been. I think the OB/GYN picked up on my need for human connection when she calmly looked at me and said, “It is your choice, but I believe your baby has Down syndrome and this (having an amnio) would allow you and your family to be informed and prepared.” She said she could book it for that afternoon, and promised me I would know the results before Christmas, so I wouldn’t have to agonize over the holidays.

After a walk around the hospital, a light lunch and a talk with my mum and husband, I agreed to the amniocentesis. It was a little daunting, but not as scary as I had thought it would be. I watched the screen and focused on my baby as the needle was gently inserted and removed, feeling it was my duty to make sure it went nowhere near my growing baby! It was painless and provided me with a good reason to say in bed for the next two days.

Three days after the amniocentesis, the genetic counselor called and told me that our baby had Down syndrome. I had prepared myself to hear this over the past few days, but regardless, it left me speechless, stunned and very sad. She asked if I had any questions, and believe it or not, all I could get out was, “Is the baby still a boy?” Yes, my baby was XY, with 47 chromosomes. Not at all what I expected just four days before when I had been telling friends about the little girl I was going to have.

Looking back on those four dark days of my pregnancy, I now have only positive thoughts. I am glad we had the opportunity to learn about our son’s unique make-up before he was born. It allowed us to learn about both the challenges we might face, and the joys we will have in raising our son. The journey to his birth was not without feelings of great sadness, loss and fear of what might be or might have been, but with time and acceptance it was also filled with the same joy, anticipation and excitement that all expectant parents feel.

Our son Owen was born on April 30, 2012. He is precious, beautiful and perfect. He has completed our family and is deeply loved by his older brothers, mum, dad, extended family and friends.

Jennifer Crowson blogs regularly for DSRF.

Mommy's Superpower!

2013-02-06

By: Christie Hoos

The ability to fly.

That’s my answer. To that classic nerd conversation starter: If you could have any superpower, what would it be?

Invisibility? Super Speed? Visions of the Future?

I can see how each one would enhance my parenting. Invisible Mom knows exactly who started it, and her children would be motivated to behave even when they are “alone.” Super Speed Homemaker gets more done in a few minutes than the rest of us in an entire day, and still has time to watch her favourite Food Network show. Psychic Mama can prevent the tantrum/fight/locking-keys-in-the-van/decorating-the-walls-with-sharpies BEFORE it even happens.

Sadly, none of these are my actual superpower.

That’s right. I have a special strength that allows me to perform beyond normal human parameters. It empowers the whole household to run smoothly (okay, smooth-er). It helps me endure when my strength is almost gone. It carries the weight of our whole family without breaking a sweat.

Routine is my superpower.

It’s not the sexiest, most exciting one out there. And it doesn’t require a cape or comic book inspired costume (though I’m not ruling that out). But I promise you, it packs a wallop!

I brush my teeth every morning. I don’t think about it. I don’t have to plan. I simply do the same thing, at the same time, every day. My lack of morning breath and significantly fewer cavities may not count as “saving a damsel in distress,” but a similar process also allows me to take daily medication and feed my children and keep my house (relatively) tidy and get our crazy family out the door each day. All these add up to a pretty heroic feat.

No matter what your age or stage or particular brand of dysfunction, you too can harness the power of routine! If you happen to have children, it can be a lifesaver. If you happen to have children with special needs, it’s an absolute necessity. Here’s why:

Routine frees up valuable time and energy.

Remember science class when you learned about levers and fulcrums and how they allow you to lift a heavy load with less effort? Routine is like that. As you shift behaviour from “intentional” into “something we do without even thinking about it,” you are able to do more, with less effort.

Get out the door in the morning. Keep the household mess from coming to life and eating us whole. Make bedtime and sleep time mean the same thing (we’re getting there).

I don’t know about you, but I need all the time and energy I can get my hands on. Trying to remember every little thing that needs doing, reacting to behavioural problems, and doing everything myself gets exhausting. Routines simplify life, prevent problems and empower children (and spouses, let’s be honest) to keep things going.

Routine makes life feel safe.

Secure children (and adults, FYI) know what to expect from their world. The stress of wondering what will happen next, and if I will-like-it/be-able-to-handle-it/am-entitled-to-watch-more-tv-right-now-instead, makes for grumpier children and parents. All children, even young toddlers, flourish when they can predict a first/then schedule and simple cause/effect.

For instance, when you get home from school you must sit on the potty, THEN you can have a snack. First comes pajamas, THEN music, rocking, cuddle and finally bed. If you throw your plate on the floor, THEN you lose it. If you do a cute dance and smile really big, THEN you get attention. If you do all your chores without complaining, THEN you can go out and play. If you do all the dishes and clean the kitchen, THEN your wife will be much more likely to give you a massage.

We’ve used pictures and symbols to reinforce routines with our children. B had a long strip of velcro on the wall; she had a picture of each morning task stuck up there (thank you Boardmaker software and Aunt Emily), and each time she finished a task she would put it in the “Finished” box at the bottom. We put new ones up for the afternoon and then a batch for before bed. She no longer needs such a detailed routine aid, but at the time, it gave her the sense of control she needed and made necessary transitions productive and less like a scene from the WWE.

Routine is inevitable.

Systems and structure aren’t everyone’s cup of tea. There are some weirdos people who prefer to wing it, to live reactively spontaneously. That may work for you in most areas, but everyone has some routines, whether we choose to or not. The unintentional, destructive ones often go by the name: bad habits.

I have just as many negative routines as positive. Sleeping until the last possible second, even though I know it’ll make our whole day much more rushed. The fight with C about proper outerwear on every rainy/cold/day-that-ends-in-y day. Eating a snack before bedtime, so it will be converted directly into fat. There is a dark side to every superpower: we are our own arch enemies.

The best way to conquer bad habits is to replace them. If you can figure out a positive routine which will supplant the destructive one, you are halfway there (you’ll have to read an article about willpower somewhere else, since it is NOT my superpower).

Routine is a servant, not a master.

This is where routine can get a bad rap. Especially from people who either a) don’t understand it or b) have an unnatural fear of change. When you are learning to cook you need to follow the recipe closely, but once you get the hang of it you can be creative, change things up, all while staying true to the spirit of the dish. In the same way, routines are not set in stone. Once they are established, they can be stretched, tweaked, negotiated and even temporarily suspended until they work for you.

Routines are a tool, not a destination. Make a plan. Try it out. Give it time to sink in. If it doesn’t make life easier, scrap it and start again.

Feature Video

From The Blog

By Glen Hoos
You knew this wasn't going to be a typical night at the theatre when the lead actor interrupted his lines to give a shout out his mom from the smoky stage, and she enthusiastically called back in response from the audience.
Indeed, there’s nothing typical at all about King Arthur's Night, a radically inclusive play in which generous ad-libbing and spontaneous improvisation are par for the course – and key to its substantial charm. The (very!) creative adaptation of the King Arthur legend, which had its Vancouver debut Wednesday evening as part of the PuSh Festival, is the product of a collaboration between Vancouver's NeWorld Theatre and the Down Syndrome Research Foundation, and springs from the fertile imagination of writer and star Niall McNeil and his co-creator Marcus Youssef.
McNeil, who has Down syndrome, first worked with Youssef on Peter Panties, an adaptation of Peter Pan which was presented at the 2011 PuSh Festival. In the audience was then-DSRF Executive Director Dawn McKenna, who expressed a desire to partner together in the future.
"Niall and I were commissioned by Luminato to write a King Arthur adaptation," recalls Youssef – a project that would ultimately be five years in the making, fueled by McNeil's extensive research into the legend. "Our Director Jamie Long, our Musical Director Veda Hille, and Niall and I started teaching classes at the Down Syndrome Research Foundation, which is where we met Tiffany King (Guinevere), Andrew Gordon (The Saxon) and Matthew Tom-Wing (Magwitch). We all agreed they were the three we all wanted to be in our show."
The DSRF students joined Niall in integrating seamlessly with the professional cast, which is bolstered on stage by a live band and 20-person choir. Together, they deliver a delightfully offbeat rendition of the Arthur tale featuring nods to local fixtures like Harrison Hot Springs, modern twists like the iPad that a lovestruck Lancelot gifts to Guinevere, and a fearsome goat army that… well, you just have to see it to get it.
The play opened to a rapturous response from the standing room only crowd at UBC's Frederic Wood theatre, the first of five almost-sold-out performances. The cast was clearly thrilled. "We love it so much; it's so much fun!" gushes leading lady King.
To Youssef and his colleagues, King Arthur's Night is so much more than just another play. In fact, he gets choked up as he reflects on what this project means to him.
"I have learned more than I can say. Beginning with my collaboration with Niall on Peter Panties and then extending it to this bigger collaboration with these guys… honestly, it makes me a bit emotional to talk about it. It's been the deepest learning experience I've ever had. There is a very big difference between what we thought they would capable of when we started and what they are now doing in the show, which is not only a whole bunch of cool acting stuff, but also some really beautiful, present performance that all the professionals in the ensemble are learning tons from. I just would have said, 'There's no way.' My perspective of what it means to be a person in the world has radically changed."
If McNeil has his way, King Arthur's Night is just the beginning. Later this spring, he's off to the Stratford Festival in Ontario, where he'll sit in on rehearsals of The Tempest at the invitation of the festival's Artistic Director, Anthony Cimolino. He's also currently working on two new adaptations: Beauty and the Beast, and Buffy the Vampire Slayer.
"Marcus isn’t able to do these with me, but there are other playwrites who can help me too," McNeil affirms confidently.
True enough, Youssef admits. "Niall’s working on a bunch of stuff; I of course can’t be involved in every single thing he does." But that doesn’t mean he’s finished with inclusive art projects, or working alongside a partner with whom he shares a special, brotherly chemistry on stage.
"We're very hopeful that in the fall we'll be able to start a once-a-week collaboratory ensemble including these guys, our professional actors, and maybe some new folks too, where we just make up new stuff, and maybe a show will come out of that," he says. And there may yet be more to come for King Arthur's Night, too: "Nothing's confirmed yet, but I'm optimistic there will be more presentations of this show in other places around North America."
That's good news for the stars of the show, who are in no way ready to give up the spotlight. Asked whether he wants to continue acting, Gordon doesn't hesitate. "All the time! It's always super cool."
King Arthur's Night will be performed daily through Feb. 4 as part of the PuSh Festival. Click here for tickets.